Come on! Let’s move Patient Engagement into Action

While others either mention or lament patient -engagement, -centricity, -centeredness, or whatever is trending this week, Patient Advocates In Research (PAIR) has been taking action for decades! The latest DIA Global Forum article (co-written with Patty Spears) offers insights about some of our work in clinical research, entitled, Beyond Patient Engagement: How Research Patient Advocates Contribute to … Continue reading Come on! Let’s move Patient Engagement into Action

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Patient Thoughts on Medical Tests for Research

Here is a guest post I wrote earlier this year for METAvivor called "How Do People Feel about Bone Marrow Exams?" It was based on a study with Bonnie King from Stanford. While this may be one of the more gruesome-sounding medical procedures that some patients go through, it is not necessarily unique.  Too often, researchers think about all … Continue reading Patient Thoughts on Medical Tests for Research

How to Work with Patient Advocacy Groups & Patients

It's been awhile since I posted anything - sorry about that. Between excessive travel, new projects with new partners, and unexpected foot surgery, time marched on without me! I actually wrote 2 guest posts that I haven't mentioned, though. Here is the first one: Get Real with Patients and Their Advocacy Groups at Clinical Trials Arena. It summarizes a … Continue reading How to Work with Patient Advocacy Groups & Patients

Make Clinical Trials Better for Patients

There are many reasons why clinical trials don't work well. A major one is not making them useful or interesting to patients. I had high hopes when I heard about the recent clinical trial protocol (plan) template from the U.S. Food & Drug Administration (FDA) and the National Institutes of Health (NIH) Joint Leadership Council (JLC). Unfortunately, it looks like they … Continue reading Make Clinical Trials Better for Patients

Patients ARE the (end)Point of Clinical Trials

Back in February, I spoke at the 2016 Arena International Outsourcing Clinical Trials West Coast Conference on "Patient Centricity" - a topic they gave me, along with some rather ambiguous objectives. I changed it to "Patients ARE the Endpoint" because it is time to get real about why the clinical trial industry exists in the first place. Yu … Continue reading Patients ARE the (end)Point of Clinical Trials